Friday, June 18, 2010

Once upon a time there was a princess. Well, she wasn't so much a princess. More like an average chick. And she had a toddler and a Husband and a job. And a blog. A blog she missed so very desperately. A blog she promises she'll start to spend more time with soon. Lots of things have happened and it's just not a good to keep it all bottled up inside. The princess might 'splode. And no one likes pink confetti. Well, no one should anyway.

Monday, September 21, 2009

Here I am, settling in with a scoop of Cheesecake filling (Blast You Philadelphia!) and a can of Pepsi, leftovers from my sons very first Birthday party yesterday. We had wonderful weather at the park and a great turnout. A few people were missing that might or might not have hurt my feelings by not coming, but, it was all about Nicolas, not me, so... whatever. I'm trying to catch myself up (Could someone put out a memo that it is spelled "Catch", not "Ketch"? Seriously...) on what's been going on and mostly, it sounds like a lot of the same stuff. Problem is, the same stuff is lingering, or going away and then coming back. The other problem is that I don't name names about work or family, so a lot of the REALLY good stuff has to be censored because I still care about being found out at work or I'm still trying to keep family members in my life. So, updates abound:

My brother is currently back in Neuro ICU, but hopefully it is very temporary. He had surgery a few days ago to put the part of his skull back in that was removed when they had to take part of his brain out in July. He has a nice round head again! The surgery was Friday and he was prepared, a little nervous, but he was okay. On Saturday, he was doing fine, but then on Sunday he became very agitated and began hallucinating. They did a CT Scan to try and figure out what was going on, but no word yet on what they believe is causing this. I have my suspicions, but I'm not a Doctor, so I'll just keep them to myself. They moved him out of Post Surgical ICU and back to Neuro ICU. He was sitting up and eating when I saw him today. He was able to have a conversation, but was easily confused and couldn't remember some events from yesterday. I'm trying to encourage him to blog when he gets home (hopefully will be this week) because I think he could greatly benefit from the cathartic effect of blogging. He is aware that he is slower than he used to be and that things are harder for him than they were. Sometimes, speaking to him, it is clear that he has suffered a brain injury and sometimes it is not. I've found one blog by a brain injury patient and I would love to show it to him. I would love to be able to spend some time every day with him helping him come to terms with what has happened and how to move forward, how to deal with the depression and how to see that he can progress even more but that he would have to put more effort into it. I love my brother very much and I pray everyday for his continued recovery.

Husband has finally been given the all clear on his back surgery! YAY!!! He would do it all over again too. He feels about 90% better than he did before the surgery. He is going back to school starting in January and I am super excited for him! Unfortunately, he has run into another circus of medical treatments: After his surgery, he was on a medication for pain that he believed also helped his mood. He had the med refilled specifically for it's anti-depressant benefits (off label). He then had blood drawn so his Primary Doctor could make sure there wasn't some other thing going on that would cause the Depression. Now, I am not a Doctor, but riddle me this: How does anyone welcome their first child, go on medical disability, get laid off and have back surgery in the span of EIGHT months and NOT end up with a little depression? SERIOUSLY!!!!! But nooooooooooo, the Dr. that pushed for the blood draw came back a few days later, forced a redraw and diagnosed my Husband with Low Testosterone. He has NO OTHER SYMPTOMS. There is no low sex drive, clearly the sperm count seems okay and his body hair is right where it should be. SO, WTF? Dr. puts him on a Testosterone patch. Husband begins analyzing every single change in his mood, in his body and begins thinking that the LT was the cause for everything ever. Then, he starts getting fevers. He's up to three fevers a day for the last two and a half weeks. Dr. took him off the patch, but thinks something else must be wrong if he's continuing to get the fevers... so, Husband is going every couple of days to his Dr. to find out what the hell is wrong. In the meantime, he's connected with a Psychologist for the Depression, he has to have MRI's and CT Scans on various body parts and he still sees his Spine Surgeon once a month. So, yeah, his appointments are hard to keep up with. (Sidebar 1: I have a great respect for his Dr., I really do. I just think if you look hard enough, you're bound to find something. Sidebar 2: I have a great deal of experience with my own psych disorders, so I am not discrediting the idea of the Depression, nor the importance in treating it, I simply think the Dr. may be off the mark a bit.)

And that leads me to my baby. My sweet baby boy turned ONE today and it has been one helluva year. In one respect, the things that have happened in the house make it difficult to view this as an awesome year, but in another, it strikes me as so very wonderful that my son has had the best year of his life. A better first year than any of his siblings will have. BOTH of his parents were home through all of it. Granted, not under the best of circumstances, and certainly not without financial struggle, if not demise, BUT that baby boy doesn't even realize this isn't normal, and it breaks my heart that the moon and stars will never align in this way again for any of our future children. But boy oh boy, I love this child. He has changed my life. I know children are supposed to, but I didn't know it would be this drastic. I'm nicer, more patient, more accepting and more empathetic. I also get my feelings hurt easier and expect much more from other people than ever before. I can now put myself in any parents shoes, whether I want to or not. It's far more difficult to watch the news, or even a Movie/TV show that references a child, especially a baby. It's also far more difficult to understand the choices some parents make regardless of how old the child is. I am more judgmental towards other parents but also more understanding of their perspective and their battles. There are certain songs I've loved forever that take on such greater meaning now, I can barely keep myself from pulling to the side of the road to weep into my hands because I'm so overcome with emotion at that very moment. Right now, as he sleeps, I consider how lucky I am to have had him happen to me and it makes everything else go away. All of the stress and chaos of the last year, so very little of it has to do with him, but at the end of each and every day, I squeeze that baby and my world is righted again. He is all that matters. And today, he turned ONE. Happy Birthday Sweet Baby Boy!

Friday, July 31, 2009

So, two weeks ago was the post of how my brother came to be in Neuro ICU. Since then, he managed to pull out every tube he was connected to, moved out of ICU and to the Neuro floor, switched to a Private Room, uttered my name, uttered many incoherent sentences, mixed incoherent with preposterous sentences and finally... made many sentences that actually mean something.

His recovery once he moved to his Private Room was as fast as lightning. He had to have a sitter 24/7 because they were afraid that with all of his movement, he would hurt himself. Last weekend, he started packing every time I or my mom went to see him because he believed we were there to pick him up and take him home.

This past Tuesday, my mom was informed that his application for a Neuro Rehab facility was declined because he was "too well". I don't know who made that call, but on Wednesday, my mom had no choice but to take him home to her house.

I've had a couple of long conversations with Jeff and his status as of now is this: He can dial a phone, he has cut a lawn, he gets confused and slurry the later in the day it is and he remembers his email password. He is depressed because a lot of the things he had forgotten are coming back to him (no word yet on HOW this happened, he says he really does not remember) and some memories are probably a little painful for him to re-experience. Yesterday we spent the day with him at my moms and he started many sentences only to have forgotten what he was saying by the end of the sentence. He still remembers how to get to the store and home by himself.

He seems very angry with my mom, and I'm not sure why. I could guess, but I don't want to slander or destroy anyone. Today he's gone bowling with my mom's husband and some of his family.

Overall, his recovery is progressing fantastically, he could probably do a few more things, or, rather, NOT do some things, to mke it even better, but he's so close to being back to himself that even if this is the best we get, we're lucky. He has some problems understanding that there are things that he does that he thinks are funny, that are not. (Like beating Husband with a dirty paper plate)... he does seem more outwardly mean than he ever was before the accident for sure.

I am glad this part of the process is over. There are still many battles ahead for him. He still has to have that part of his skull put back together and he still has to come to terms with many of the things he has forgotten that come back, all over again. He has a long road and, as of yet, he has not begun to look forward. I want to look forward for him, but I can't make him see. I hope he sees it soon.

Monday, July 13, 2009

I've started this post a number of times, trying to decide the tone. I keep finding myself all over the map and I would prefer you not need GPS and a notepad to keep up. I hate to put off beginning the actual post, but I am having such a hard time here. I want to explain things that have happened, without sounding judgmental, without including my own feelings and without turning this post into a history of how I came to be the way that I am. It's more difficult than you might think. So, I will try it this way:

On Saturday July 4, 2009, my mother called me numerous times before 8am. At 11:00pm the night before, she heard a funny noise coming from her basement, she went downstairs to discover that Jeff was having a seizure. She called 911, EMS couldn't get him to stop seizing, they transported him to a local hospital, they measured his Intracranial Pressure (ICP) and it was measuring 25mmHg (the normal levels are between 5 and 8. 45-50 indicates brain death). They immediately drilled a hole in his skull to relieve the pressure, this brought his levels down to app. 18. The local hospital transported him to a much bigger hospital and that's where he has been since.

Much of the first day is a blur, no real information as to how this happened or what to expect was given. The doctors were pretty certain he suffered a head trauma and quite certain that he had been bleeding into his brain for about two days. The only thing we could do was recount the previous days and compare notes to see if there was some indication that something was off. There were many. None of which I will talk about in this post, because I can't do it analytically. All I will say is that hindsight is 20/20 and I hope that my brothers prognosis hasn't been altered by assumptions made during the days leading up to the seizure.

As the days have gone by, there hasn't been too much to report. A lot of the same information, every single day:

They lower sedation around 8am and the docs do rounds. He is very agitated and tries to pull the vent and catheter and IV's out. They have had to restrain him. Up until yesterday, they had upgraded to leather restraints. All of this thrashing and battle, but no response to commands. They tell him to wiggle his toes and he doesn't (the first day, they had indicated he could do one foot, but not the other), they tell him to give a thumbs up and he doesn't. Same thing, every day. No decline though.

We get some response from him when we visit, seemingly purposeful movements toward us, looking at us, holding his hand up to us, appearing to try to talk around the tubes down his throat and a few tears that don't seem like random eye waterings to me.

I'm not a "head in the sand" kind of gal. I know what's happening. I know it's likely that he won't be exactly the same ever. I know it's possible that he won't be able to function on his own. I also know it's possible that he will make a good recovery, not full, but good. I say this because I believe they are purposeful movements. I'm one of the most cynical, disbelieving people you will ever meet. One of my mottos is "Expect the worst and be pleasantly surprised", so I am not fooling myself here. I just do not feel like this is the best it gets for him.

Over the last 10 days, we have learned some interesting things at least everyday. We have learned that they had a bolt in his head to measure the ICP, we also learned that when a patient tries to remove it, sometimes they can't get it back in. This was kind of a blessing, because he was reminding me a bit of the Jack in the Box Restaurant character, with a pointy cone off to the side of his head. BUT, they said they were done with it anyway. A lesion in his brain was preventing the bolt from getting a good read. We've learned that every hour they do a neural check, coaxing him to respond to commands and that every two hours they change his position to prevent bed sores. We have learned that his Glasgow Coma Score is actually around an 11 or 12, not a 9 as I had figured in my head. We've learned that part of his thrashing and punching (!) might actually be from alcohol withdrawals and not just the brain injury. And yesterday we learned that sometimes, even after a full week in the ICU, after the injury has peaked at 3 days, sometimes it is necessary to perform emergency neurosurgery to remove the part of the brain that is damaged. AND that, once they remove the part of the skull for the surgery, they put it in a deep freezer and wait 3 months before they put it back in. We learned this when consent was needed at 8am yesterday morning to do this procedure. His brain had swelled, causing a shift that might lead to a stroke if left untreated. The surgery was successful. No additional loss of function most likely, because the area was already damaged and, probably, dead.

Today we learned that a central line can sometimes cause an infection, or at least, that's what we are hoping has caused him to have a high fever the last couple of days. They put in a new central line, but cannot remove the old one until they are certain the new one is well placed. Once they remove the old one, they will send it to the lab to find out if it was causing an infection. Today, I also learned that when part of your skull is missing, the fluid needs to go somewhere and might pool around your eye socket causing a swelling that is quite shocking when one is not prepared for it. Today, we learned that, along with the brain injury, the origin of which we still do not know, there is also a fracture of two vertebrae in his neck. WHAT THE FUCK HAPPENED TO MY BROTHER??

I'm not expecting to ever find out, but if we do, I will be pleasantly surprised.

Thursday, June 18, 2009

(Throwback to one of the first plays I was ever in. Not too many people get it, but whenever I hear someone say "This is a test" or "This is a book", the above dialogue goes through my head. If you've done the exercise, you and I are now equally dorky. SWEET!) Ahem, I digress...

1) My son's PENIS is not CIRCUMCISED. I do not wish to start a cause here. It was a decision Husband and I made and, should Wee One ever regret our decision, he can always reverse it. 2) Husband had back surgery four weeks ago today. The morning of his surgery, I asked his surgeon (whom I shall dub "Mr. Fantastic-And-Kinda-Hot-Too") when he would be able to "perform" again. Mr. FAKHT said two weeks. No shit - two weeks plus two days later, Husband confirmed that his PENIS works. He feels much better about the surgery now. I think he thought it was going to take his ability to get laid away. Really dodged a bullet there, sweetheart...3) I still have VAGINA Knives. I have no idea what the pain is, but it didn't go away with my hCG levels. Hurts like a bitch, but it's not as frequent as when I was prego.4) About my BOOBS: They are working for a livin... but they aren't as productive as I think they should be. I've given them some performance enhancing Fenugreek, but I still am not convinced they are working at the pace I would prefer. And you're welcome if that song is in your head now (whoa-oh-whoa workin for a livin...)5) GORILLAS. I got nothin. Just wanted to include it. 6) Also, I am in love with Gene Simmons Family Jewels. Truly. I've never been a HUGE Kiss fan, I mean, everyone loves a little Detroit Rock City, but I never had an interest in the show until I accidentally watched an episode the other night (the one where he takes a lie detector test for Shannon). And now, oh yes, it has been programmed on my DVR. Alongside Kathy Griffin and Tori Spelling because I love women who have an enormous Homosexual fan base.

Monday, June 15, 2009

Seriously, he started at one side of the room and as I've moved things, he just keeps moving around the room looking for things. He's also begun that wonderful stage of separation anxiety. I wasn't sure until today. I also didn't know it would affect his sleep. HOLY SHIT! I went from having this perfect sleeper to He Who Won't Stop Screaming From His Crib overnight. Sigh.

Monday, June 8, 2009

Husband had surgery on his spine a little over two weeks ago. Decompression and fusion of L4 and L5. The first few days were very rough for him, he had consistent agonizing pain that didn't seem to be touched by narcotics. Finally on Day 4 of the writhing, the day they were to discharge him, they gave him a shot of steroids to relieve some of the pain in his sciatic nerve. Apparently they had angered the fellow during surgery and the pain that couldn't be touched with Vicodin, Oxycodone and the overdose of Dilaudid suddenly disappeared. Awesome. For three days I felt like I was sitting at the death bed of a loved one and poof, all better. Well, as better as one can get after that surgery.

He is doing well, better than expected. he can walk long distances and is down to three Vicodin a day. He still has restrictions on lifting, bending and twisting, none of which he will be able to do until August 21 (not that I'm counting down or anything). He can grill, he can drive and we bought him the Gopher III over the weekend, so now I don't have to run out of my office and pick things up for him AND he can help put away Wee One's toys. He's getting to be pretty self sufficient, but can't really help with the baby or the house cleaning and, obviously, can't work until he's fully recovered.

To deal with the stresses of feeling like I'm going it alone, I made up with my friend the anti-depressant. We've come to an understanding: I will continue to put up with it's silly side effects and it will help me cope with the rage I feel every night. It's working for us. As to the stuff that needs to get done, I won't lie to you... if my house is clean when you come over, it's because I knew you were coming or someone else had pity on our son and didn't want to see him crawling through dust bunnies anymore. If my vehicle is in the driveway, it's because I managed to pay the bill the day before it got repossessed. And if I have electricity and gas service, it's only because I slipped a twenty to the tech who came out to turn it off. I'm barely keeping my shit together most days. But, my Husband is recovering BEAUTIFULLY and he quit smoking which ROCKS. I do not think now is a good time for me to give up my half a pack a day... the voices in my head have requested I not. So, for all of the naysayers mentioned in the previous post... I must stick my tongue out and blow a raspberry in your general vicinity. And, all things considered... life is good and wonderful!